I always thought it was “corny” to say I am ALIVE!

I woke up this morning to the sound of a rattling chest. The good news is, at this moment, it does not appear to be sarcoidosis: it is something else.

At the sound of the rattle I had instant flashbacks. It is a sound that automatically kicks into my memory bank. Many years ago my chest was rattling just before the sarcoidosis was discovered. I went to the hospital and the doctors told me that the sarcoidosis had spread throughout my body and they did not know how to control it. They asked if they could do some trial and error with medications. I said they could. They asked if the interns and medical students could come to see me and talk to me. At one time there was a long line of young people waiting to look into my eyes and talk to me. At first they talked to me about my illness. As time went on they began talking to me about their lives. Once they began to talk to me about their lives the conversation usually started with them saying something about me dying. After a while they stopped talking about that and started asking questions about life. That was a very positive moment in my life.

Many years later I started to see a new doctor. He was a general practitioner. I woke up one morning and my lungs were rattling. I believed that the sarcoidosis was active again. When I went to see him I asked him if he knew much about sarcoidosis. He said that he had studied it but had never seen it. He sent me for an x-ray and when I came back he had the x-ray on the screen. When he looked at it he just stared. Then he turned to me and said, “I am not skilled in reading x-rays, I will have to send this to someone else and get the results back to you.” I said that would not be necessary. Let me look at it. I began to explain to him about the scar tissue and where the sarcoidosis was active. He stood there stunned and said he had never seen an x-ray like this. He asked if I would mind if he had the other doctors look at it. He said as general practitioners this is something they may never see again. I said that it was okay. When the other doctors and medical staff came they asked me questions, I answered the best I could. They quickly moved away from what the x-ray had shown and started to ask questions about the disease. I felt good that I could share my life in a positive way.

Not long ago I woke up with my wife is sitting there looking at me. She said your lungs woke me up. They rattled most of the night. I got up, got dressed, and went to the emergency room. I explained to a young doctor that I had sarcoidosis and will need to be checked. I will need a chest x-ray to see how active it is. I said other doctors usually put me on prednisone. He looked at me and he said, “I know all about sarcoidosis. I don’t treat sarcoidosis that way,” and he walked out. About an hour later he came back and he told me he was going to run blood tests and check my heart. I listened to him talk on for a long time. I did my best to hold my tongue. Then he told me it was probably not sarcoidosis at all and he would take care of it. I could no longer hold my tongue, I asked him how old he was. He told me his age was none of my business. I told him he looked quite young. I asked him if he had ever read about sarcoidosis in the studies that had been done in Chicago in the ’70s. He said that he had. I told him that I was part of the studies. I had been told that many of the pictures included pictures of my eyes and other organs that had been tested and studied. I then told him I wanted a second opinion. He got annoyed and walked out. A second doctor walked in and said “I hear you think you have sarcoidosis.” I told her my story. She said, “Let’s get the chest x-ray.” After the results came back she said, “It appears your sarcoidosis is active.” She prescribed prednisone and rest. I felt good that I had understood myself. I also felt good that I understood that I was now very much a part of the system.

This morning I woke up because my lungs were rattling. I waited for a couple of hours and the rattling disappeared. I was breathing good. I have pneumonia. I believe I only have pneumonia. I felt good to make that conclusion. I might be wrong but it is now mid-afternoon and I feel better now than I did this morning. The rattling cleared up and my mind is clear. I’ve spent most of the day in meetings on the telephone and had no problems. I recognize that I have limitations. I no longer beat myself up for that. I am alive and that feels good.

2 thoughts on “I always thought it was “corny” to say I am ALIVE!

  1. Carl: I have had similar days. I have found my standards for what qualifies as a “Good” day are constantly changing. I have had a very bad time since May. However, my health pendulum is on the too short trip to the good side. On January 3rd, I was walking from a bus to my infectious disease doctor at the hospital where most of my doctors practice. It was a short three block walk. After two blocks, my left leg pain escalated such that I could not put enough of my weight on it to walk. I hobbled into the ER and stood for a half hour until triage. I just knew that if I sat down, I would not get up.
    The problem had started in May as back pain and after much ado, was mainly in just my left sacroiliac joint. After MRIs, xrays and an array of doctors scratching their heads; they concluded it was soft tissue and recommended physical therapy and pain management. This was two weeks before the January 3rd fiasco. Physical therapy said “don’t come back” it just keeps getting worse. Pain management said they could see me in three months, even though, I could barely walk, couldn’t sleep, stand, sit, walk any distance or stand the effects of the pain killers and continued to sink into a deeper depression.
    After a long wait. The attending asked me some questions and I told him of the results of the team of doctors over eight months. His response was “What do you expect me to do?” I wanted to say “I would walk out of here if I could walk”. Instead I was respectful and quiet as I was asked why I came to the ER in the first place. To me this was funny, I could not walk under my own power, and a doctor was trying to get rid of me. He said he would order xrays and then re-evaluate. Xrays for a soft tissue issue? I asked what he expected to find and he said “Nothing”. I got the xrays and the technician was amazingly companionate and patient as I struggled to move my torso even fractions of an inch with excruciating pain. I called my old doctor, who is not practicing any longer, and asked what they should do to treat a sarcoidous filled patient in my condition. I was told that I needed a PET scan, but they would never do that in an ER. A bone scan could be done and it should show no inflammation due to my 40 mg of prednisone; however, if it shows anything, it is a major problem.
    Hours later, the xrays confirmed I had bones and nothing more as expected. The doctor wanted me to leave and I protested saying “but I can’t walk”, followed by “What do you want me to do”. I said how about a bone scan? If I was a comedian, I would have been pleased with the laughter that followed. He deceided to double my pain meds to the point of me being too high to function and it worked, I could hobble out of the hospital.
    The next day, I was back in the ER at a little hospital who at least cared to try to help me. They could not fix the problem; however, they helped me such that I could make it to the next step in my recovery.
    As it turns out, the neuro part of my sarcoidosis extended to the spinal column. I found a disc in the thoracic spine that caused the pain in the lumbar area nerves to the sacroiliac joint on the left. Different chiropractic adjustment and it is now just a manageable pain.
    The next time I’m in the ER and asked “Why did you come here?”, I will respond “To brighten your day with laughter and perhaps, help me on my journey to another day!”

  2. Carl and Frank, thank you both for sharing your experiences on this blog, I think two of the hardest things about sarc is the sheer uncertainty and unpredictability. I was diagnosed in 2005 with pulmonary sarc, although it has affected, with varying degrees, other systems. To me, four of the best weapons we have in our arsenal is educating ourselves, being proactive, finding others with our illness with whom we can share our thoughts, and just keeping a positive mental attitude. Keep fighting the good fight, guys, and may God bless you both!

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